Tuesday, 27 March 2018

Patient Advisory Groups (Part 1)

Patient Advisory Groups for Research Studies - some random thoughts over a few blog posts

A few weeks ago I was asked about 'how to set up and run a Patient Advisory Group'. The question came from someone who had been asked to chair a Group who had tried looking for something more than Terms of Reference. 

REQUEST: So, other active patient involvers*: Do you have any good stories, posters, reports?

The questions I am exploring in this series are:
  • What are Patient Advisory Groups? 
  • How do they work best? 
  • What might be helpful to know?

And...How might these match with the NIHR INVOLVE Standards for Public Involvement?

THE EXPERTISE of EXPERIENCE (Standard: Working Together)

I think the first thing to note is that it is often because of our personal experiences, we become members of a Patient Advisory Group.

We attend to offer insights that are rooted in that experience. We may have similar conditions and the same treatments yet our journeys are often quite personal and unique. This is valuable and useful knowledge that is helpful for researchers.

Our role is to bring that different perspective -a new pair of eyes to an issue. We are present to ask a question, shake a stick, gently puncture an opinion, challenge an attitude and occasionally declare that the Emperor has no clothes. 

Most of the time our experience and knowledge helps ground the research in real life, adding a pinch of common sense. Our voices and presence provide different perspectives for a study that might not have been considered, thought relevant or seen as a priority. 

I had no knowledge of science, medicine or research when I began and I am not sure whether I know that much more now. I have, however, usually found that it helps members of the Group to have some interest and curiosity about research, treatments and science, combined with a willingness to learn. Ultimately, though, it is our experience that matters most. This is our ‘Specialist Knowledge’ section. 

As Dame Sally Davies, the Chief Medical Officer says, “No matter how complicated the science, or how brilliant the researcher, patients and the public always offer unique, invaluable insights.” 

The other people in the research team bring the expertise in science, treatments and research. They often come with such extensive knowledge that they welcome the opportunity to try to make their work more understandable and accessible to the public. 

When we, as patients, first get involved it all seems a bit strange. I liken it to spending a few days in another country such as France or Spain. Certain things are familiar but others are different. I’m okay reading something slowly but speaking seems almost impossible. I use a few useful phrases, understand a little bit of the culture and then realise that there is a lot to more to learn from each other’s history, people and customs. Over time we start to have a greater understanding of each other. 

One of the challenges is that the Group can become the only source of the ‘advice’ and that risks it being insular and potentially exclusive. It can be really valuable to work with local support and self-help groups, to encourage the researchers to visit out-patient and other clinics to get that current and immediate reality check. It can be helpful to target specific communities where the risk of the condition is higher. These contacts can also help develop a broader network with whom you can communicate especially about progress and the results.

The issues raised in this series can be looked at in the light of the NIHR INVOLVE Standards which are aimed at helping us develop our thinking, understanding and practice about public involvement. 

I think the issues in this post fall mainly under the standard about Working Together. 

As we explore this Standard, we may want to reflect on the relationship, the levelness of the playing field and the mutual benefits of this joint endeavour. 

I encourage Groups to capture the narrative about what what Working Together means: a) for the research, b) for the patients, c) for the researchers. This will prove more useful than counting the meetings we held and the numbers who attended. A good example might an article from local media coverage mentioning the involvement and the research: https://www.nottinghampost.com/news/health/nottingham-lead-fight-against-breast-1381253

I would also ask people to think about what made it work and how you overcame any barriers you faced. Finally, what mistakes do you make and what did you learn most?

*  @RheumPatient has just kindly suggested this excellent paper https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12478#support-information-section

You might like to read the following posts in this series From Story to Reflection - Part 2 ; Purpose and Plans - Part 3 and Developing People - Part 4. The final article will look at how we record and report on the activity of a Patient Advisory Group: A Tale to Tell along with a separate post on Becoming a Member of an Steering Group

Tuesday, 13 March 2018

Participació en recerca

What do you see - a bull’s head or a bicycle saddle and handlebars? 

Is health research the saddle or the bull - some people might see the protocol and others live the experience. 

But sometimes it is about more than the way we see each other. The words we use and the way we hear them can separate us.

Even a song can be interpreted differently by various artists and makes you wonder if we should say - Let’s Call the Whole Thing Off. One version of the song by George and Ira Gershwin is sung by Ginger Rogers and Fred Astaire and the other gives us Ella Fitzgerald and Louis Armstrong.

"But, oh, if we call the whole thing off
Then we must part
And, oh, if we ever part, then that might break my heart"

I mention Picasso's work and these other examples as I have been invited to speak in Barcelona. 

I have the pleasure of working with Paula Adam Bernad and Ion Arrizabalaga Garde from AQuAS, the Agency for Health Quality and Assessment of Catalonia*. 

We have, of course, different perspectives but instead of calling the whole thing off we are working together to shape the presentation I shall give - co-creating!

The differences are encapsulated by...

LANGUAGE - Some Catalonian, Spanish, English and of course a wee nimsh o’ Scots can actually bring us together

VOCABULARY - Participation is what I might call Involvement in England but does this really matter as long as we both are describing the same thing. 

EXPECTATIONS - What I thought might be good to talk about may not actually be of value to those who attend the Conference.

Ultimately, we want to see patient experience, the patient voice and the presence of patients and the public making a difference. But how....

We then began a really interesting and illuminating discourse by phone and email where we tested out different ideas. I began by posing some questions to help guide my thoughts and Paula and Ion asked more about the WHY.

I am moving from what we in the UK call Patient and Public Involvement (PPI) to how it is described in Catalonia - Patient and Public Participation (PPP).

The second theme that we have agreed upon is WHAT MAKES IT WORK. So this will form the basis of the talk along with the question: Què té a veure la pedra Rosetta amb la participació en recerca? 

You will need to revisit my blog on the 4th April to find out more.

* El Sistema d’Avaluació de la Recerca i Innovació en Salut de Catalunya (SARIS) és un instrument del Pla estratègic de recerca i innovació en salut (PERIS) del Departament de Salut de la Generalitat de Catalunya. El SARIS és un ‘sistema de recerca responsable’ que millora l’impacte del PERIS a través de l’anàlisi i la implicació dels actors. 

Friday, 2 March 2018

We need more than information from mobile health and digital technology

Patients need more than information from Technology –

thinking about meaningful involvement

(These notes capture the main points of my talks at the ASPIRE - EDGE Conference 2018 and the mHealth event)

When we think about Mobile Health and Digital Technology, whether apps, systems and processes, we need to start from the research participant. We need to see it through their eyes, wear that t-shirt, walk in those shoes, think with that mind

It is not enough to think about how clever the technology is; how smart it looks, how it uses artificial intelligence - if it doesn’t fit, I’m not going to use it – if it doesn’t help me access research, take part, help get involved, find the results
I love tech but I have a drawer full of gadgets, wires, plugs that I don’t use; apps I haven’t opened in weeks, email updates that I never open.
So, l ask you to really think about the Research Participant
Research participant is NOT just the person who arrives in a timely fashion to be recruited to a study

  •      It is about the public at large
  •      It needs to target specific communities of need – cultural, geographic,
  •      Consider where people who use or come across NHS Settings - GP, Pharmacy, Care Homes
  • A Printing Press 

  •       Think about how the technology suits our needs, fits with our lifestyle and uses information we already collect
  •       Crosses our daily path to the shops, the pub and restaurant

Technology and Innovation themselves are not the answer. 


The Printing Press was of no use if people can't read and write. With technology we have to think about how to help people use or make it so intuitive that it becomes easy.

Meaningful Involvement

Involving patients and the public are key to making this work. I have chosen to make these Four4Involvement to help make it meaningful: Research, Insight, Learning and Impact


Actively involve with a purpose and do so at the earliest opportunity and throughout...
  • The IDEAS Stage – About CHECKING on interest and worth                          
  • The DESIGN Stage - About OPINIONS on what and how                 
  • The DEVELOPMENT Stage – About TESTING about practicalities         
  • The APPLICATION Stage – About USING in real life
The Rosetta Stone

As we communicate with Patients think Rosetta Stone - - local language, government policy and pictures.


If you have one or two patient representative they are NOT your involvement. They should be there to help you plan your involvement...

  •      For different reasons 
  •      At different points
  •      With different people
  •      In different places


There must be some benefit beyond what it adds to the research. We have to look at the opportunities to gain from each other and to signpost to where people can learn more

I used my current favourites... 
Join Dementia Research
A free online course
National Institute for Health Research


We have to make an IMPACT. We must involve people in order to make a difference. It is basically very simple yet difficult and challenging.

Having recently bought a narrowboat I know the feeling. It is basically very simple, goes very slowly and for lots of the time you just keep it on a straight line. 

It also is a different culture with a new language and skill set. It is okay to make some mistakes and to seek advice and help. Patients are a really lovely community and very willing to help. So, are the narrowboat community who seem endlessly patient with me as I make contact again and again.